I want to share with you some amazing things happening lately:
Thank you to all of you who voted in the Pepsi Refresh contest for Sophia's Cure - we finally made it to first place and got $250,000 worth of funding towards SMA research!!! Simply AMAZING! With many clicks on a simple "vote" button, we were able to raise a quarter of a million dollars... something that would've taken many fundraisers and lots more effort and time, so THANK YOU!
Some other awesome news in the SMA world.... I finally have enough people on board to start a Families of SMA chapter here in Georgia!!! AMAZING! I've been trying to start one for months now, but it's been hard to find enough people who want to take on the responsibility and I don't have the time to devote to being President, or I totally would (plus you need at least three other officers to start and run the chapter). We're having our first "get-to-know-you" meeting in a few days and I am really excited to meet a handful of people who share the same vision as I do... It's crazy to think we have so many resources here (Children's Healthcare of Atlanta as well as many other great medical offices) and no chapter to help newly diagnosed families. I am really looking forward to being able to help future families and hopefully provide a resource and a place to turn when their world comes crashing down like ours did...
More SMA stuff: I just finished designing a poster for the Hope and Light Foundation here in Atlanta (a foundation dedicated to raising money for SMA research) for an upcoming fundraiser. If you are wanting a night out on the town and you live in Atlanta, consider going to one of the participating restaurants in the Virginia Highlands for dinner Monday, August 9th from 6-10pm. Restaurants include Everybody's Pizza (VA High. location only), Atkins Park Tavern, George's Bar & Restaurant, Fontaine's Oyster House, Highland Tap, and Skips' (in Avondale Estates)... Ten percent of your bill will go back to the H&L Foundation.
In other news, Skylar had an appointment with the GI doctor to go over her upper GI results and to discuss long term plans. We found out that the reason her belly is so small is that because they had to use a lot of it in order to do the fundoplication procedure. I didn't even think about how much they used to wrap her stomach around her esophagus and stitch it... so it makes sense that her tummy would be extremely small, but we still never would've guessed it could only hold an ounce at a time. Since my last post, her feedings have been going much better. The continuous during the day have helped relieve a lot of stress - Skylar's average heart rate has gone down some since the switch and she just seems more comfortable. Overall, the GI doc was really pleased and said to keep doing what we're doing.
We had an appointment to get her ankle splints - they messed up scheduling us and then the person who did the splints didn't make them correctly so we're going back this week to get them re-done. The good news is that they've been super great about working with us to squeeze us in and make-up for their mistakes. Our physical therapist is going to write out a detailed explanation for me to give to them so hopefully they'll be done correctly this time :) Skylar's feet are really starting to curl in and her legs aren't growing straight. Her knees are angled in so that if she tried to stand, she would be bow-legged. We're just going to focus on her ankles/feet and wrists right now since that is what she is able to move, but may need some wisdom with proceeding any further with her legs and body alignment.
Skylar's been off and on with good days and bad... Some days she struggles and other days she's fine and happy. There's no rhyme or reason to it (at least that we can figure out) and so we're doing what we always do... just taking it a day at a time and thanking God for every day we have together as a family.
I have to share one more thing... Sorry this is a long one! I have been supporting a boy in India for at least 5 years now, maybe more. He calls me "Aunt" and it's just been a really neat relationship and a blessing. We exchange letters and I will send him extra money for holidays and his birthday and it's really fun to hear how he and his family was able to use it. One time he wrote me back so excited because they were able to get a chair - they had never had a chair in their home before. Stuff like that always amazes me and makes me stop and think... and be thankful for what we have... and sometimes wish life were more simple. Anyway, back to the point :) I wrote him a letter explaining what we were going through with Skylar and I got this letter last week:
"I received your letter. I became so sad to read your letter. I and my family members are praying for my younger sister Skylar. Surely God will cure my sister Skylar. In my project every second Saturday a prayer meeting is arranged. All children and staff together prayed for my sister Skylar. I hope that surely God will cure my sister. Nothing is impossible for God. We are continously praying for Skylar Aunt. Don't Worry. Our Almighty God will comfort you."
How amazing is that!? He's in the 11th grade now... if you want to pray for him, his name is Jerin. His letter also informed me that it is the rainy season and many communicable diseases are spreading so he asked for specific prayer for protection and health.
We're continually amazed with the people God has placed in our lives and want to thank everyone for your generosity, prayer, support and love for us. I'll try to post again soon so it's not so long :) Thanks for reading. Peace.